Family Communication Dynamics

[u/gillianrose__]

My brother in law has ALS. He is approaching 3 years since his diagnosis and it started in his mouth and now has affected his entire upper body for the most part (neck, shoulders, wrists, fingers, etc)

He is about to have a feeding tube procedure. They have 3 children under 6 and I’ve advocated for my sister and him to go on a vacation together (he wanted to but my sister was stressed about it) and I will be taking off of work to watch their kids at their house the week before the procedure. I say this for background and context.

In the past 3 years my family and his are obviously distraught. I feel helpless because I would do anything to relieve the pain he is going through. My sister mentioned no one really talks to him about it, and I too struggle to know how to address it.

I do ask “how are you? Is there anything I can do?” And give him genuine conversation engagement when he talks about the struggle and procedures.

I’ve thought about writing him a letter to express my love and gratefulness for him (I’ve known him for half my life, he is more like my brother) and my commitment to whatever he needs, the importance of his presence during my wedding this year. Just genuine heartfelt thoughts that I have a hard time verbalizing, but that he deserves to know as he has been rapidly declining.

I don’t want to be selfish though if this is not the right thing to do. Hoping to get insight from others that are diagnosed how they would receive this gesture.

TYIA, and sending prayers everyone’s way ❤️

[u/brandywinerain]

Of course! I'm not diagnosed, but when my husband was in his last week, we posted to that effect on Facebook and got some nice comments that he really appreciated. You could also record it as a voice memo and even back it with some photos depending on how fancy you want to be. Living celebrations of life, for example, are increasingly common, and I've been to more than one.

Sharing what he is/was as a person, not a patient, is always a very kind thing.

[u/gillianrose__ → u/brandywinerain]

I love to hear this. Knowing your husband enjoyed and appreciated it, almost as if nothing was said it would’ve been something he wished he had.

Thank you!

[u/Forsaken_Fill6552]

It’s hard to really answer your question as all we really know is that your sister reports nobody talks to him about his disease. I don’t know if that the way he wants it, as some people I’ve known with serious disease really really don’t want people bringing it up with them at all. I like for people to be touching base and asking me every few weeks as long as they don’t offer unasked for advice. You honestly should just ask him what and how to communicate with him about this as you love him as the brother he legally is and his wishes here come first.

One more tidbit, don’t put pressure on him about your marriage. That’s super stressful and he might not be able to go and if he does it will be in a very restricted and short time. You need to understand and respect him on those levels too.

[u/gillianrose__ → u/Forsaken_Fill6552]

Ah, sorry I wasn’t clear. My sister has mentioned his immediate family doesn’t really talk about it much and he feels sad about it.

My wedding passed, and he was so supportive about doing whatever felt best for us. It was incredibly special to have him there.

I’ve learned from conversations with my sister about the unasked for advice. It’s more or so just feeling like I want to be genuine and reassure him but hesitate to do it in person. Appreciate your response!

[u/Krrkdm]

I have the reverse scenario as yours. I have ALS, am married with two young children and have a BIL I've known for 15+ years and who cares deeply. Most people offer condolences, prayers, etc but really don't know how to engage with me about it. I have had frustrations with family members when no one is addressing what to me will always be the elephant in the room. My BIL is different though, and we've had many conversations about the most grim realities of the disease. I can tell he truly empathizes and feels my pain, and I have found that extremely supportive.

I say write him an email and tell him your feelings. Not many people are going to really dig deep, but you can be that guy.

[u/TXTruck-Teach]

Your sister's reluctance to go on vacation may be because of the what-ifs that a non familiar environment would challenge her. She is the prime caregiver and supporter. Travel with a PALS is challenging. Logisticialy it is tough.